A motherless daughter ponders obesity, public health, and the will to change

I Googled my mom today. I don’t know why, really. You do weird stuff sometimes when your mom is dead. Things just happen out of the blue and you act on them. Even 3 years after her death. In fact, I probably increase my strange behavior as time goes on as I search for ways to keep her present and relevant in my life. People let you do these things or say certain things, because they really aren’t sure what else to do, since they have a tangible mother and you don’t anymore. They don’t know if they should feel happy, guilty, sad…so, you can get away with a bit more once you’ve qualified yourself by stating that you are a motherless daughter. “Ah, those motherless daughters…strange bunch”. Women that are a little too bold, a little too brazen, a little too high on life since they know the truth of its transiency…motherless daughters get all the breaks. Except that…they are motherless.

I was trying to think of where to start for a reaction paper on any current health issue in a media source for my Health Behavior and Health Education class for grad school. Public Health seemed the best fit for a new start in life. After Mom’s diagnosis with pancreatic cancer my brain shifted gears entirely.  I started rethinking my career, rethinking my health…rethinking my marriage. I wish they’d shifted more towards just moving to Savannah and taking care of her for her last 9 months of life…but we didn’t want to really believe in the stats then. You never do. “Everyone is a Statistic of One,” my former Surg-Onc boss used to say. Except that statistics exist for a reason.  The information shows a pattern. This is a pattern of who will die and who will live within a given time frame and within a reasonable measure of error. This is how we plan and provide for ourselves when it comes to disease, especially chronic disease, because there is time. Time to act.

Yet, the human spirit is at odds with statistics when it comes to hope. We try to ignore the facts bearing down on us, telling us there is an inevitable and unbearable outcome. We focus, instead, on the inspirational stories of miraculous battles fought to beat the odds and to reach 5-years-out when the prognosis was only 12 to 15 months.  We search for the outliers, the anomalies to the statistical analysis that show that those Ones exist. They are their own statistic well beyond the area under the curve. And they have survived beyond all reasonable doubt.  How reasonably dubious that is, though, to ignore a massive amount of data showing that your mother, with a multitude of comorbidities, fits ever so precisely into the molded Kaplan-Meier curve. The Survival curve, they say. The average survival after surgery was 9 months. And wouldn’t you know…she surely did survive for 9 months.  Shortly thereafter, I enrolled in the School of Allied Health’s Masters in Public Health.

I thought that being in oncology would have prepared me for helping Mom and my family deal with her cancer. It did in some senses, certainly, at least with the factual point of view. But if I’d been in the Public Health program instead at that time, I would have been much more effective in helping her manage her radical life change. There are so many ways a person can thrive in our society based on the programs and information available, even through life’s nastiest challenges. It is just a matter of having someone guide you. So, I’ll be able to be that guide for someone else now. Just not Mom. I have had enough time to come to peace with that. God prepared a path for me, fueled by the fear and angst of losing my mother, towards pondering and discovering how we can live more like a Statistic of One when the time arrives. We will never be able to squash our hope for survival as this is our nature, so evolutionarily sound in our minds…so how do I show someone how to take back a small amount of control?

The article I chose for my reaction paper is from the latest issue of Cancer Today: “The Weight of Obesity on Cancer Patients” by Melissa Weber.  I knew without looking at the statistics that obesity was probably one of the risk factors for developing pancreatic cancer. Mom had been obese for the latter third of her life, much of it stemming from her hypothyroid and relatively sedentary lifestyle. My parents also tended to eat out a lot. At home, Mom created full, nutritious meals since she had been a dietician by profession. Yet somehow, there was a lack of knowledge, or just some apathy towards action, maybe, that kept them from maintaining a truly healthy lifestyle. So I have no doubt that obesity was one of the causes of cancer within Mom’s body – the environment was ripe for disease and cellular malfunction. I was only just starting to understand how a person can change that environment within her body after a cancer diagnosis. But, as Weber quotes a nutrition scientist in her article, “There’s a world of difference between knowing what you’re supposed to do and having the skills to do it.” I had no idea how to impart the knowledge and help my mother make a change post-diagnosis, post-chemo, post-radiation, post-feeling-like-hell towards creating a best-case-scenario-cancer-recurrent-proof body. Or, at least, how to help her be cancer resistant. That’s where public health professionals come in.

The American Institute for Cancer Research estimates that over 120,000 people, just in the U.S., develop cancer every year that is associated with being overweight or obese. More than one third of people in the entire country are obese. The growing numbers, especially among children, is startling. We have set ourselves up to fail in the realm of control over our bodies and health. Not only have we created a society ripe with cardiovascular disease, chronic pain, depression, and immobility, but one where excess weight contributes to increased deaths for men and women because it increases cancer occurrence or recurrence. The consequences for an obese cancer patient extend beyond just having cancer, as they have other concerns that arise during treatment, such as an increased risk for lymphedema in breast cancer, incontinence in prostate cancer, as well as an increase of clots, cancer-related fatigue, and hormonal imbalance causing inflammation (Weber).   In fact, the CDC reports that obese people have a healthcare cost of almost 1,500 dollars more than healthy weight people. The burden of an obese person extends beyond their own health risk. The weight is figurative on the national healthcare system.

Oncologists, or even primary care physicians, are inadequately trained on whole body health. Luckily, ASCO, the American Society of Clinical Oncology, just released 2014 guidelines for exercise in cancer patients. Though the guidelines are more of a suggestion than an actual how-do-you-motivate-a-survivor-to-exercise guide, it represents a shift in how we are addressing the care of our cancer patients. According to Weber, the ACS and American College of Sports Medicine are picking up the slack by offering more precise advice on duration and quality of exercise for which these patients should strive to achieve. How, then, do we ensure that this shift in the mindset of the medical world actually has an impact?

Enter Public Health. Education and promotion of healthy behavior starts with understanding your population. In this case, the thought of long term survival or decreasing one’s risk for recurrence is actually on the back burner for many patients. They have immediate issues facing them as they complete cycles of chemotherapy and receive grays of radiation. They are fatigued, nauseous, cannot taste food, have a foggy mind, as well as lymphedema; not to mention the onslaught of mental depression and hopeless thoughts. Promoting a health and wellness program at this point in a person’s life takes twice the effort that it would if it were done for preventative means. Understanding the audience is the public health professional’s first goal – in this lies the means to show someone the skills needed to make that change. The research is clear. Exercise and healthy nutrition help mitigate the immediate challenges facing cancer survivors. These practices improve patients’ quality of life by lessening the side-effects, or at least their severity. As a bonus, the risk of recurrence for various cancers is shown to decrease. Other chronic health diseases will be mitigated, as well; Weber states that a 5% loss of overall body weight leads to a lower risk of heart disease and diabetes. This does have to be sustained over time for it to be effective, yet it indicates how even the slightest efforts in overall health can have a positive impact.

It certainly takes a community to create the kind of programs necessary to support and promote these healthy habits. In public health, after searching out the needs or perceived needs of a group of people, the next step is to start looking into assets to help develop a program that would address these needs. Until I worked in oncology, I had never looked around my community to see what was available to help people achieve health. Multitudes of resources exist, actually, and surprisingly. They are under-utilized, in my opinion, simply because of lack of marketing capital or knowledge. Every cancer center has support groups, the YMCA has low cost exercise programs and access to a plethora of trainers and nutrition experts, many churches offer space for yoga and light aerobics, and the internet offers us all the opportunity to be responsible for our own healthcare.

I have learned most of this and have delved deeply into wanting to share my knowledge on health and nutrition in an effort to help folks help their moms, and perhaps themselves in the realm of prevention. The audacity fostered in being a motherless daughter becomes quite helpful in this regard. I have always pushed myself, but to motivate another person is a totally different angle. How do you show someone what she or he is capable of? That came with confidence in knowing what I am capable of and then witnessing it in people around me once I surrounded myself with others striving for similar well-being. The Public Health program then gave me the tools to share what I have learned and search out the resources in our community to make us all more effective in creating healthy lives.

I am not subtle when I coach or teach. I expect when someone comes to me, asking for help, or when I have gone to a venue where someone has made the effort to show up and learn…I expect that they have come for a reason to change. I expect that they are looking to me to help them achieve self-efficacy to create their own healthy body environment. I enjoy watching people see what they are capable of. This is, by far, the most amazing process you can witness, whether within yourself or someone else. When a woman looks at me and says, “I didn’t know I could do that!” after a tough workout or a week of eating a huge amount of vegetables minus the daily junk food, it fills me up with joy for her. My approach is, in fact, audacious. I am not a fan of too tiny of steps toward your goals. If you have made the commitment, then there is no reason but to succeed towards that goal as quickly as possible. I thrive on being a task master, for sure, but I believe it is helpful – because we have become used to being handled with gentle hands in our society when it comes to being responsible for our own healthcare.

Weber’s article makes me ponder our society’s change just in the last 50 years. Why isn’t health our highest priority? Where did we lose the desire and ability to maintain our own bodies? I am a diehard proponent of self-efficacy when it comes to fitness and nutrition. This is what the “Ahha!” moments lead to when someone reaches beyond his perceived capacities. This may be different for each person, but the moment it happens, they can never go back. They have asked more of themselves, fought for it even, and seen success. This is where my specialty is – I’ll take your inkling of motivation and push you past your comfort zone just enough to show you that you really don’t need me – it was there all along. You just needed someone to holler at you a bit, whether to get moving or to stop making excuses.

It’s also about self-reflection and truth. I can eat chocolate all day, too, but I darn sure will not deny that every time I do it, I’m creating inflammation in my body’s tissues and a potential for cellular mutations to occur that lead to disease. I will never tell you that moderation is the key – I have never seen results that I want with moderation. If I moderately eat chocolate, I’ll stay fatigued and bloated. If I moderately exercise, I’ll hit a plateau and start to gain weight or lose muscle tone or decrease my cardiovascular capacity. I have many, many days when eating right is a mental challenge that I can’t always win. So, I practice and preach at the same time – I screw up and climb back on the horse every single day. I’ll expect you to do the same. You’ll find me in the Public Health Extreme section and not particularly accommodating once I know you have had enough of your current state of being. I have seen people respond to me over and over with this type of accountability; when it comes down to it, folks are ready to step up to the plate and be challenged with some intensity. That is precisely the seriousness with which you should take your health once you face the facts.

Motherless daughters can be so bold and confident at the price of knowing how precious life really is. I could not offer advice and motivation to my own mother to help her prevent cancer or, then, to survive her cancer better. Yet, as I reacted to Weber’s article and understood where my path has led me since Mom’s death, I can embrace this whole-heartedly. As time passes, my mother does stay relevant and ever present in my life. She becomes the inspiration behind my coaching and teaching.

Obesity is an epidemic - an epidemic with consequences as devastating as death and severe disability and depression for our loved ones. If you are ready to make that change, then heck, yeah, I’ll help you do that. We’re in luck that we don’t have to do it alone, either. The community supports health, it really does. It’s just a matter of targeting where the resources are and using them and then witnessing what you are capable of once you have the skills to take that next step.

What did I find when I Googled my mother? Well…billiongraves.com had a very nice photo of her gravestone. I don’t get to see it since it is in Savannah, GA, and I’m in Louisiana. I could look at it without the image catapulting me into a deep melancholy, so that’s quite a healing process that has occurred over this long 3 years post-mom, post-divorce, post-career change, post-life assessment. I attribute that to people like Weber who write about the things that catch my attention and give me more direction and motivation towards creating a successful way of living in order to share it with others. Not to mention my professors, my classmates and all the people with which I exchange ideas and experiences to obtain this ultimate health and fitness - the multitude of training partners, health nuts, coaches, students, and clients.

I’ve learned over and over these past years, that my mother continues to bless me even after her life with me is complete. So, really…I’m not so much a motherless daughter with her ever present spirit guiding me to continually learn from her life and use that to positively impact those around me.

 

 

 

 

Melissa Weber's article can be found at: http://www.cancertodaymag.org/Fall2014/Pages/Overweight-Obese-Cancer-Patients-Face-Worse-Side-Effects-Survival-Odds.aspx?Page=0



To Whom It May Concern, i.e. The Folks Buying My Home:

Sunday, August 25, 2013

I know I’m not unique in saying that you are buying an era of my life in that home. It’s a home, after all, where a person has lived and loved, struggled and swore. Grown. Tripped. Dug up the septic pipes. Tore out trees. Swung on the swing. Demolished the bathroom. Laid down the floors. Shared some dreams. Planned some goals. But then…then one day you leave.

I want you to know a little something about that era, though. So that when you have some unexplained happiness or sadness or inkling of a feeling that you don’t know from whence it came, well…remember that there have been lives well lived in your home. And I tell you, sir, I live my life expending my full potential of energy every day, so pardon me if I left it on the doorstep.

This was our first home. And we hated it from the moment we arrived at midnight on a winter night. I won’t go into details here…I’ll simply say that we did not know how to inspect and buy our first home – otherwise we wouldn’t have bought this one. Save for the rustic barn and the sweet, grassy acre, I sobbed for days wondering what we had gotten into. That was over 8 years ago. But you, sir, are lucky. Because I left much love in that home. Apparently…by God’s choice…just for you.

The love was in the work...Dad and I started with the laminate wood; we had some experimenting going on, but I’ll trust you won’t be able to find where. Our skills increased rapidly and that last floor, the first one you step your feet on when you walk in the front or carport door…well, that’s the one I like to roll around on. The textured laminate and the pale hue…it’s still so new, that I didn’t get the time I needed to enjoy it well. And I can’t even lament the splendid tile we put in, just a couple months before I moved out…I didn’t know then that I would leave so, so soon. Dad and I were amazed at our new found tiling-ability. We get cocky like that when we have no one else to compare ourselves to. We were competing even, just a bit, to see who could lay just a little bit straighter than the other.

If I told you all the work that Dad and I did together on our your home, well, you would be able to really appreciate what is before you now. And why I sincerely hope that you will not be sobbing for the first week that you live there. We tried to make sure of that. Please see the kind notes left by my soon-to-be-divorced-husband on some of the house idiosyncrasies. We didn’t want you to have to figure anything out on your own – we want you to be at home.

The love was in the living…the sunroom. Ah, the sunroom. You will get to enjoy the sunroom like I never was able. You have 18 windows. I loved those windows…open to the green yard, tall oaks, and rustic barn. I was so lucky today, my last day, to see the wind shift through the leaves one last time…my favorite thing to feel and see out those windows. Love that room. 15 cats lived there once. Oh, that’s a whole other story. A burden and a blessing of a story. And 6…6 are left behind to the earth behind that barn.

Do this for me…enjoy that sunroom as I had wanted to…a breakfast nook with a recovered wood table, smooth benches. Shelves above the windows to store a hundred books or more. Lounge in a reading chair facing the woods – so you don’t miss Mama Fox in the springtime, searching for prey near the tiny creek or a cautious doe pushing through the layers of leaves from the prior fall. If you hear some laughter when you’re sitting in peace…I’ll have to tell you not to be afraid. That was the last place I danced with my mother. Not long before we found out she had cancer.

The love was in the marriage…of late night movies and Ben & Jerry’s smorgasbords. The supportive years…the distant years…the reconnecting years…the falling apart years. Each room played a part...every yard of that acre was traversed...to try and find a way to keep that era alive. I can’t go on here. You’ve heard a story similar before, I’m sure.

The love was in the neighbors…oh, and you do not quite know how lucky you are, just yet. God will provide for you in so many ways in the years to come, and let me assure you that it will be in the form of the kindest and most generous folks you’ve ever met. So, please…when the slowly dying live oak tree that sits so close to the east neighbors’ yard drops yet another branch, crushing their fence – please go spend time helping saw it and haul it. And when the neighbor to the west fears a copperhead slithered dangerously close to her patio from her beautifully overgrown, native-Louisianan-plant yard – please go wrangle it and relocate it. Be a good neighbor and they will love you so much, beyond what you deserve.

So, I leave so much behind, you see. I leave you the sweat of my father, the dance of my mother, the solidity of my marriage, and the superb kindness of my neighbors. I leave you the best a woman can do in creating a beautiful home through mostly will and labor since there was never enough money. I had to stand there for quite some time today thinking of everything that we accomplished to make that house a home. And apparently…just for you. Just for you…To Whom It May Concern.

Sincerely,

Lori

P.S. And gosh darnit, you appreciate that septic system that I expended every last bit of energy I had digging up every year so that you have an entirely new field of pipe clear of massive oak roots. That, sir, was my most triumphant accomplishment. Please feel free to call me should you encounter any problems…I would love to work on that acre again…feel that earth…breathe in that breeze…hear my mother’s laughter…and get Dad on over for some tandem digging. For 200 bucks an hour.

The Marriage Plunger

Friday, May 31, 2013

"Do you want the plunger?" he said.
I cocked my head, not expecting the offer. "Well, yes, actually. There is one at my new apartment, but it's not a good one.."
"Yeah, take it...."
"Thanks! Thank you. Yeah, okay." I appreciated the kindness.

We both had liked that plunger. One of the most expensive items in the bathroom, but totally worth the price for the extra heavy duty black rubber, with corrugated design and good gripping, non-splinter handle. Just one of those things in life that makes it easier when things go awry.

What happened to the marriage plunger, I wonder? To push out all that shit that kept stopping up our ability to love one another? We kept getting splinters in our hands every time we tried harder, because somehow harder just seemed to compact our feelings more, into wadded cesspools of bitterness and angst. Nothing flowed in either of our lives as we awaited the other to roto-rooter our way around the muck.

We hoped, I'm sure, that somewhere along the line, surely...surely, the debris would dissipate and we'd discover somewhere how all the mistakes made couldn't possibly culminate in the failure of an 11 year marriage. We weren't quitters. We weren't failures.

And yet...are you not a failure if you fail to recognize that you are not contributing to the health of your own marriage any more? Are you not being the most compassionate and caring human being possible by letting go of this person who can most certainly find someone to take care of them better than you can. In the end, it hasn't been as much about a failed marriage as a failure to let it go much, much sooner so that both of us could explore life in a more fulfilling, less muck-filled way.

So, here we are, finally, after many attempts and plunging the hell out of our marriage - here we are splitting up the "stuff" of our joint life. Let me tell you...it's an odd feeling.

"You bought that trash can, I bought this one...we'll each take one." Fair deal, not complicated. But, really, just having to worry about splitting up trashcans is simultaneously mundane and earth shattering.

"So...", he holds up the fine toothed cat brush. I see that the Zoom Groom brush has already been laid on my pile. "So, do you want this one?" I can tell he'd like to keep it. "You can have it, no problem, especially since you'll have Ming with all that hair." Another even trade.

It literally took 15 minutes to go through the house to split it up. We don't have much, but we also lived a rather equitable life. Which, in retrospect, I do not suggest. Because if you are going to share a life with someone...then share it. Wholly. When you play at marriage, even-Steven, like you would with your siblings...it creates a distance and doesn't promote having true shared decisions about your life goals. And therein lies the problem. Maintain your life vision with one another; in fact, make it quotidien. Without that constant check-in, then your goals, your lives, start to diverge.

Ah, roadblock. "Hmm, well, I want the printer and fire box, but I suppose I can do without them right now. I suppose. I'm sure you want those?"
"Thanks for the reminder, I forgot about the fire box. Hmmmm," he contemplates. "Well, you can have the futon if I can take those...," He barters.
"Yup, deal," I sighed. Otherwise I wouldn't have anywhere for people to sit that visited my new, tiny duplex in the green-green grasses of the happy suburbia neighborhood to which I am moving. That would have been embarrassing. People aren't as happy sitting on a yoga mat in the middle of a hardwood floor as I am. It would have just been "eccentric" or "frugal" or, worse yet, "poor woman, she's divorced at 40 and **hushed tones** a bit poor".

"You want the scrubby sponges?" These were the ones with the long handle. Almost 5 bucks each, so yes, yes I wanted those since the duplex has no dishwasher. Life was about to really change without a dishwasher. But at least I got the scrubby sponges for those hard to reach areas.

It all seemed so absurd. I'll take one roll of paper towels, you take the cloth napkins without the fringe because you always hated the fringe. Dad gifted you the flat screen one Christmas, so it really is yours...I can't watch much TV while in grad school anyway. And, oh yeah, I can't afford cable anymore because I have to pay a full rent.

"Can I have...well, can I have the plate we got for our wedding..." from one of his friends who painted it herself. It's always been my favorite serving plate. And it's one of the things engraved with both our names...but it's on the bottom. It's a good plate! I don't believe in ditching any and everything that would remind me of my soon-to-be-x-husband. We've shared 13 years of our lives together and taught each other many thing for which I know I am grateful. We were best friends once. You don't have to erase those good memories in order to move on.

And there's been great kindness especially in this week when I am finally moving out. What a journey for us both over many years. I, personally, had to take a lot of time to find out how I contributed to the unhealthy partnership. My bitterness and anger clouded my mind for many years. God really didn't want me to move on until I could see so clearly what my hand had been in changing the dynamics of our marriage and led to the spiral down the drain. We were both culpable. Once I embraced that...I could start to forgive both of us and see our diverging paths taking us to more enjoyable and fulfilling lives.

I reached for the pepper and salt grinders. I pulled my hand back. Of all the things in the kitchen, these had been his favorite things. I'll add them to my "Want" list, I thought, which was steadily growing and well beyond affordable as I contemplated new Internet installation service fees, rent many times higher than my half of the mortgage, cat care for my half of the pride, and all the dark chocolate and Nutella I would need to buy throughout the transition period.

No...leaving the grinders was a kindness I wanted to extend. We are both good people. We knew on the day of our wedding that it was the absolute right thing to do. God had a plan for us and it included each other...we just didn't know it would be temporary. We aren't quite ready to let that kindness leave our lives either...because we've both offered help much more this past week than we have in months.

"Do you have dish washing liquid?" He asked and contemplated his detailed list, something I always admired because it made our lives thorough and prepared.

"Yes, actually a lot because I bought some and then there was still some in the apartment," I explained.

He was getting ready to go as I packed my second load - it will take me a week to get thoroughly moved out. He looked at me kindly, a little sadly as he explained he had to go now. Kind of a longer look, because he knew there was something I wasn't thinking of that I would need later but forget to get at the store on my way to the apartment. Because he does know many things about me so well, and I presume no one else ever will. Yet he holds back because its not his responsibility anymore to try to improve my preparedness for whatever my day holds. And we are jointly sad about that.

The plunger of life saved us both for some exciting and fulfilling things ahead, I have no doubt. I grabbed the real, super-duper toilet bowl plunger and tossed it on the passenger side. It'll be one of the more expensive items in my apartment. And it sure will make my life easier sometimes. And I'll thank my former husband for that.

My Book - An Unlikely Couple: The Widower Father and the Divorcee Daughter

Friday, May 17, 2013

It hit me today that I have an artistic opportunity. The only “art” I can sorta claim as a talent is writing. What I write the best about is my own experiences – ever since I stopped being afraid of people. Well, not true! I’m still afraid of people, but I’ve been able to find faith in people, as well, so that’s made sharing personal thoughts and feelings an okay thing to venture into. Folks respond to reality. It’s who we are.

I think I’ll have to write a book…a memoir of sorts over the course of, what I hope to be, many years. I have the title, the opening page and the closing page all finished.

An Unlikely Couple: The Widower Father and the Divorcee Daughter
How Shared Loneliness Fosters Understanding, Shatters Old Assumptions, and Creates New Horizons.

It starts with today’s text conversation with Dad. This is because it was a good look into our personalities and a little of the natural contention between us. Yet also part of the openness that has developed between us in communication which did not exist prior to both of our losses; his loss being a wife of 43 years to cancer, while mine being my role as a wife after 11 years to diverging paths.

Chapter 1
Fostering Understanding

DD: BTW, church on Sunday. You have nice clothes?
WF: Nice enough
DD: Hmm, I will determine.
WF: Grampa’s can go in shorts if they want to.
DD: No not this service. Slacks and polo maybe. Grampa still has to look daper.
WF: God doesn’t care as long as you worship.
DD: I am new in the church and I don’t want to be known as the divorcee with the eccentric father just yet…That makes me slightly un-dateable.
WF: Go to work and quit worrying about it.


Chapters 2-Many Other Chapters
Shattering Old Assumptions and Creating New Horizons

These chapters in the middle will describe our adventures throughout the world. How I became paranoid about keeping him safe on the Paris subway system but got to sit lazily together in front of Notre Dame at an artisan bread festival. How we both fell in love with contemporary, Renaissance, and ancient art in London museums and both remained severely handicapped about <<Look Left << and >>Look Right>>. How a small town in Germany gave both of us much needed rest and time for contemplation at the end of the first year without Mom – where, on the anniversary of her death, we were floating down the river Rhein relishing the site of steep vineyards and old castles. These chapters will describe our journeys with the rest of the family when all our vacations for two years were meeting for extreme-sport obstacle course races. And how we discovered that we love Savannah for the exact same reasons, most notably our love of flowers and old, intricate, and smart architecture. Through our self-discovery in aloneness, we will have the opportunity to look at each other in a new light and with new compassion. And then, then we will be able to help each other move forward…

Final Chapter
The Promise

“You have to take care of him,” she looked at me with wide eyes from her hospice bed. She did this now when she was saying something serious. It was almost as if she had to make a great effort to get a complete thought conveyed to me and for some reason she had to push her head and face forward, opening her eyes with intensity.
“He doesn’t know how to.”

It was at that moment that my life changed forever. After knowing my parents for 38 years, I understood for the very first time that the assumptions I’d made about my parents’ relationship was false. When that happens, pretty much everything that you ever knew kind of disappears. As if the world lied to you.

My father needed my mother. My mother needed to take care of my father. This was who they were. I had always thought the traditional role my mother played as his wife was forced upon her by society, by the times she was raised. And partially by my father because of his expectations. Yet, this was not the case. My mother took it upon herself to care for this man, because she believed he could not live without her. For the first time ever, I thought, “Like mother, like daughter.” And that changed my perspective on my father, my mother, my own marriage, and me.

Dad has always been, in my mind’s eye, the figure of extreme strength, perfectionism, pull-yourself-up-by-your-bootstraps, and man-with-the-plan workaholic. Yet, I call Dad the quintessential existentialist, which I am not wrong about. I started to see at that moment, and subsequent times afterwards, that this made him vulnerable in many ways. He trusts easily, while Mom did not. He spends freely, while Mom did not. He thinks of each moment as it is happening and lives within it, while Mom thought constantly of consequences, missing living within many moments. She was the rock, the stability of the family, while Dad is the wanderer, the dreamer…the needy one.

“I will, Mom, I will.” And my life has changed forever.

-- The End --

 

 

Seeing My Mother

Saturday, May 11 to Sunday, May 12, 2013

This second Mother’s Day…is harder than the first. I think it’s because you prepare yourself for all the “Firsts”. My first birthday without Mom, Christmas without Mom, her first birthday without…her, and the first Mother’s Day sans a mother to hug and say, “You are the best mom E-ver!”

While this second one, well, it just snuck up on me. Then without warning, there was a 1-800-FLOWERS email in my in-box: “Nothing says ‘I love you, Mom!’ Like 10 billion roses!”

And you suck in your breath for one…long…moment…

Ah, it’s Mother’s Day. Mother’s Day. Hi Mom! (because I do talk to her when she reminds me to do so from beyond). Hi Mom…Mom. Crap, Mom. Arrrrgh. Mom. Stop laughing at me, I can feel it. You know this sucks. Especially now…without you…with everything that is changing and moving and growing and going-to-pot and simultaneously turning out wonderfully. But you aren’t here to see me through it all. I’m becoming that woman, that woman you really wanted me to be. Did you really have to help me get here from that vantage point? Instead of right here? Right here where I could grasp your small, soft hand with my strong hand and say, as I always did, “sheesh, I sure do have Dad’s hands. Yours are so delicate.”

As the day comes upon me, though, after this past couple weeks of massive media marketing for mom paraphernalia, I find that my heart is stilled and my breath is released just a little. Something quite amazing became apparent to me over this past year. Really not imagining it was possible, but I’ve come to love my mother even more. This is because I was able to see her perspective on me, as her daughter, thus forming a better understanding of who she was as my mother and as a woman.

I was shocked into a feeling that I’ve never felt before when my nephew fell down mighty hard in front of me on a jungle gym we were scaling. The endless moment between seeing him lose his grip and then his little body fall to the platform is something that plays in my head at least once a week. There was another moment, then, after he landed when his brain finally synapsed into assessment of the situation and his mind and body felt the shock and pain of it all. His face was already turned up towards mine - probably hurling down towards him, though I don’t remember how I got next to him, and his facial expression and subsequent wail was enough to make me literally want to pass out. It was at that moment that I finally understood my mother more fully than I ever have before.

One way I always described my mother was “fearful”. She expressed a lot of fear when it came to doing many things, especially if they were new. Fear of what could happen, how you could get hurt, how some person would respond; I mistakenly saw this as a great weakness and worked hard throughout my life to overcome, if not the feeling of fear, at least the inability to act from fear or react in a positive way. It was, and is, a daily challenge because, well, I was raised by the woman. “What ifs” were ingrained in me. I see the difference between my “what ifs” and Mom’s “what ifs”, however. Mine stem from fear of failure, of inadequacy, of missing the mark on my goals. Mom’s “what ifs” stemmed from fear for those she loved most. And I was her baby girl, the essence of herself, the “She” she had wanted to be.

Mom distinctly told me one time that she had made a conscious effort to raise me just the opposite of how her mother had raised her. I didn’t know my grandmother, who died when I was 6, but the gist is that she was a feisty Italian American woman, having married late and birthed late with just my mom. Grandma had a drunk for a brother, probably mafia-connected so the rumor has it, a paranoid-schizophrenic sister, and a whole bunch of other siblings with some interesting personalities (11 total). It came down to the fact that she controlled my mother thoroughly. Mom also went to full-out Catholic girl’s school where the nuns did actually rap knuckles. So my mom’s world had no “what ifs” whatsoever for her to decide on. Imagine the challenge, then, of raising your daughter to be self-sufficient and independent when you, yourself, were not familiar with how that girl’s life would unfold.

But unfold it did…and she let me live it. There are many stories that could be told here, about the constant ebb and flow of my mother’s care that unconsciously puzzled me, because I was so independent yet trapped at the same time to bring up “what ifs” that created tiny balls of fear in my mind. What if I didn’t win, what if I couldn’t do it, what if I dated him, what if it just all fell through? The most poignant example of Mom overcoming her fear, though, is when she let me go away to many foreign lands.

Puerto Rico at 18 to meet my dad, as he was assigned there for hurricane relief efforts; she couldn’t understand how easy it was for me to fly off on my own to this distant island. Then I went to Russia for three weeks as a college freshman; we were supposedly some of the first tourists to set foot in Siberia after the Soviet Union collapsed. I was so excited but her trepidation always took some fun out of the beginning of my events. “Stop being so afraid,” I would always think. Next there was a trip with Dad and my grandfather to Finland at the end of college – she had “what ifs” ready for all of us. Shortly thereafter, I truly took off, for my first job after graduation to Mesa, Arizona. You would have thought it was also Siberia, instead of suburbia USA. “I just wish you would find a nice man, and settle down.” Huh? I thought as I looked 10 yards away at my boyfriend who was moving out with me. Ah, but you see, he was from Malaysia…so the threat of my skipping off to a foreign land again was very real. And this was not her idea of a “nice guy.” I never got to Malaysia.

Africa, though, I got to Africa next. This is it. This is where, when I look back over the events leading up to my next escape, I can see now how her fears were solely out of the deepest love for me. Not that I doubted it then. What I mean is that I see now the extreme sacrifice she was making in her own well-being by letting her only daughter, her youngest child, at 24 years old, go to the second poorest country in all of the African continent. To live in the bush by herself. In the Sub-Saharan desert, mind you – who lets their daughter do that? Brave, brave mothers, that’s who.

As I stood helplessly, and nauseously, by while my brother assessed my nephew in a fetal position, I replayed in my mind what I could have done differently. Should I have let him climb there, could I have been closer, why didn’t I react fast enough to grab him…? What-ifs. After weeks of thinking those same things and also contemplating all the climbing my mother let me do and the falls she watched me take, I saw her for the first time. Because I saw it in me. Her fear was no weakness, just the deepest love possible. She didn’t stop me when I was headed for that ledge on the jungle gym when I exclaimed, “Oh! I’ve never tried this side before!” Mom reined in her fear just enough to let me go well beyond her comfort zone and sometimes into a very real dread for my life. She was so strong. I am sad that I did not learn this when she was alive. Now I understand my mother and I feel for her, I am her. I love her more and more beyond her death.

My nephew was fine, by the way. He needed to be held for a good half hour by his mom, but then was able to jog to the elevator so we could freshen up and get down to the fire pit for toasting marshmallows. I can’t say that I’m fine. I’m a mom but not a mom. I’ve got that mom-feeling ability that I wasn’t really prepared for, so I’m trying to figure out how to use it wisely. Luckily, I realized, too, that a key piece to Mom’s “what if” puzzle was her faith in God. With my own journey, I’ve been able to discover how incredibly faithful my mom was in trusting God’s plan. I read her diaries after her death and this was the central theme after each post. She wrote or mentioned a bible verse and always, always asked God for strength and direction. This was her peace, I’m sure, in the middle of the night when her daughter was thousands of miles away. She simply knew that she could rely on God in the end, despite her fears. She accepted whatever the consequences would be, whatever answers God gave her because she was brave enough to trust him fully.

It is now turning, as I write, the second Mother’s Day without Mom. It’s just a day. Each of these days is now without Mom. But I feel her. And she helps me write about her. To share her. To share me. And to tell you all, those with your mother on this earth, to grab her hand today and caress it and look at it and notice if you have some characteristics in your hands that are from hers. Most of all, look at her and see her. See her for the mother to you that she is, and most of all for the woman that she is. You lucky, lucky people.

 

 

 

After awhile...that grief that comes...

Saturday, March 2, 2013

Have you ever felt suddenly guided? Like you knew you weren't making this choice to move on your own? While choosing a card for a friend at the bookstore at work Friday, I was ...standing in front of the cards that said "to a son from mother" and grabbed one. And it was perfectly descriptive of what I think my mom thought about my brother, her first child, her only boy, the love of her life. It took everything I had not to cry right then and there. (so remember not to approach me in the LSU bookstore if I'm standing in front of the cards, y'all)

So I bought it, and will send it to my brother...because mom inspired me to reach for it and think to do this for him, I just felt it. I have many cards from her, and will cut out her "Love, Mom" signature and glue it in there. Let him get verklempt, too. There's an inexplicable bond for a mother with her son, and I saw that in the last 10 years with them. Her death affected him in a very different way than it did me.

This has put her forefront in my mind this weekend, and I realized something that many of you know already...someone didn't fully explain grief to me in the beginning. "Time" they said, will heal my pain at losing her. I found out that this part was true last week when I got a new phone and was able to delete her non-existent contact info from it with a little guilt but realizing I could finally do this after almost two years. Yet, though my "acute" pain at losing her would abate...they didn't mention the grief that grows over time.

I've now recognized why my friends and family that lost their parents years ago tear up almost immediately or soften their voice when they talk or just don't bring it up. You become fatigued over time with the weight of life without being able to share it with your lost parent. You know that feeling if they are alive now, "oh, I haven't talked to Mom in FOR-ever! I need to call her". Because of that unconditional love and support, that hug across the miles that let's you feel like even your bad choices are quite alright, you'll always be just fine...you always, always have a cheerleader on your sideline.

When time goes on and on and on, without that reassurance and love and validation, even, your heart has moments of heaviness that can't be explained until you take a moment to really think of why...

I was fortunate enough to attend a Roman Catholic service today for a friend choosing to join that faith. It's hard for me to step into a Catholic church because I just feel my mother in every prayer that's said and scripture that's read. I'm always on the brink of walking out, because I don't know if I can handle her essence that heavy on me. But today, since it was a small group of people, and Monsignor was quite a jolly fellow with a superb wit and story telling ability, I settled in to a needed comfort zone. The smells, the recitations, the habits that are ingrained in me though I don't profess to be of that faith anymore, were such a caress today. The stained glass windows, familiar statues, stations of the cross, pews, standing/kneeling/sitting/standing/sitting/kneeling/standing ;-) - tis the Catholic way. My mother loved it and she helped me feel that calm within today.

As always, I lit a vigil candle and donned a beautiful handmade, black lace mantilla I got just after her death, kneeling close by the Virgin Mary. Because, well, Mom really felt a reflection of herself in Mary, I think, by name (Marilyn) and deed (selflessness and struggle). Doing this makes me feel very reverent and curiously capable of focusing only on Mom.

I suppose now the journey will be to find strength within myself to live the rest of my life without her...a seeming eternity, really. But certainly her goal and hope had always been to instill this kind of strength in my brother and me. I'm so thankful that she knows we're not capable of that right now and that some divine motivation is needed from time to time, like sending my brother a message "from" her.

 

 

Hospice - AKA Zombie Land

Friday, May 6, 2011

There's a communal kitchen, with a communal refrigerator: "All food must be labeled with the Name, Room Number, and Date. Anything over 7 days old will be discarded. Refrigerator is cleaned out every Monday". I see the labels in a plastic pouch taped to the door with a pen shoved in with them, the plastic torn down one side from everyone extracting the sheet.

I stare at the label sheet, my pen hovers over the lines..."Today's the 4th, right?" I ask a woman that walks into the kitchen. Her shirt is wrinkled and slightly askew on her body, her hair is washed but fluffy, having not been blow-dried into a style and fixed with hair products of any kind - natural, unkempt. "I honestly don't know," she says. "I can't keep track."

"Yeah," I say, "I've only been here a couple days and I don't even know." Sunday was the first, I remember, let me count...yeah, it’s the fourth."

Hospice is Zombie Land, I realize.  It’s a timeless place.  No one knows what day it is, the souls hanging between life and death never know what time it is, activities are carried on with no beginning and no end as there are no goals, no deadlines...oh, well, actually deadlines...deadline, deadline. What a word. Every word seems a little heavier in a hospice.

One of the first things my mom asks when she is coming out of a morphine stupor or abruptly awakened by the night nurse's last swift turn of her body before the shift ends is "What time is it?" Well, that was one of the first things she said.  She didn't ask that today.

I haven't even been here many days, but I've also stayed the nights and so that's doubled my "days". 24 hour days give you a lot more time to experience things...like pain and fear, but also joy and peace. Interactions with people in Zombie Land are much different than on the Outside.  You have an immediate connection with people. We are all here to experience this pain and we cannot call it our own, but yet each of us let's another feel that they are unique in their pain somehow.  I don't know how. "Hello, how are you?" "Oh, just hanging in there...you know." "Yeah, me too, I'm sorry"

Zombie Land is a place where the path to Death is demystified. Little booklets are in each room's cupboard, or laid nonchalantly on the community kitchen table - "When Death is Near". Here's what you need to know 1-3 months before death, 1-2 weeks before death, days before death..."Okay, we see some of the things from this list and from the list", my brother points out between 1-2 weeks and days before death.  Crap. The page becomes a little fuzzy.

Before I read the Death Manual last night, I experienced something on the list without being pre-warned - throat gurgling. It hadn't happened the night before, this was new. It sounded unnatural, deathly, telling...this had to be it. I dragged the industrial pull-out chair-bed as close as possible to Mom's side, releasing the rail.  There was a huge gap still between the beds. "Extra pillow, where are the extra pillows," I thought, as I stumbled to the cabinet. It made a bridge between the two where I could lay my belly across the gap, legs splayed behind me and hanging off the pull-out so I could get my head as close to Mom as possible. "Okay, watch the arms, they're so edematous its painful...watch not to bump her head, watch any pressure on her shoulder." I finally settled beside her upper arm and listened to her breaths that seemed to take so long to come then gurgle down and around for some time.  I dozed a couple times, catching my breath and stopping my heart each time I shook awake.

This really wasn't it. I finally found the night nurse to listen and assess as it got more pronounced. I had to know. I am the responsible one for calling my father and brother in the middle of the night to say "It's time". I didn't think of this as a concern until the moment I thought I would need to make this call.  Sometimes I think I can handle this; now I know most times that I cannot.  Who can? And even though every single person in Zombie Land has to go through this, no amount of lists in Death Manuals or advice from Those-With-Prior-Knowledge can prepare you for that moment when your mother is truly, actually, eternally going to die..die..die.

The nurse gave me patient and sound advice on morphine. Morphine sucks, can I just say. Morphine is necessary in Zombie Land and it just sucks. Help the pain of Death, take away the choice to die. What's the balance between keeping my mother as pain free as possible but being able to wake her up enough to eat some yogurt and scrambled eggs in the morning? The pancreatic cancer metastasized to her liver will kill her, sure, but it’s the wasting away from not eating that will take her first. But what if that's not her choice - what if I can rally her, Ra! Ra! Ra!, to eat to live-small meals-several a day-protein packed-calorie rich...can't I try one last ditch effort only if she could stay awake for only 5 minutes. Asking for a miracle, albeit, but aren't you allowed to try?

I calmed down finally about her breathing - it wasn't, in fact, Death Time. I spent the next 30 minutes sobbing on the patio wooden bench in the cool, southern spring air. Balled up tight, rocking - now I know, now I know why people can't always talk about losing their mothers. It’s an abyss. Thank goodness there were French doors in the room releasing me out into the woods, a breeze chilled and calmed me. Then I realized there were probably security cameras...oh well, what haven't the staff seen. I can't even imagine the stories they could write.

Comical things happen in Zombie Land, too, though. Like people forget some of their normal inhibitions. "Hi, um...you asked me earlier about the Wi-Fi connection in the dining area - but you said my name first, I'm sorry, but do we know each other?" I was confused by this man that had lightly tapped on my mother's room door as I stepped out to address the interruption. "No, you must of misheard me," I said, "I simply said 'Hey, is the Wi-Fi working in here?' when I saw you on your computer." "Oh, well, okay - I guess...well, anyway, I'm Gary, then." "Hi, Gary, I'm Lori, so nice to meet you." "Okay, well, I'll see you around."

I stepped back in the room to see my brother grinning at me and my father intent on his computer, though also with a grin. "Huh? What? Uh-un - he was SO NOT hitting on me, shut up!" "Yeah, okay, right...you believe that," my brother laughed. In Zombie Land, seriously? In the end, Gary ended up being my midnight "date" after my sob session as I sat in the kitchen sipping lukewarm coffee and scanning the daily paper wearily.  Somehow the daily news of national triumph at the downfall of an international terrorist didn't faze me at all. Death and more death.

I suppose you could get picked up in a hospice. Though it would be odd..."Soooo, which relative are YOU here to see die?" That's what you have in common to start off with. Not an ideal ice breaker. But I wasn’t convinced my brother was right, and who cared, anyway – Life intermingled with Death in Zombie Land in such a strange way. We settled into a nice conversation about his grandpa who has been in hospice for 19 days already, having sprung back from a week of not eating or drinking, miraculously re-initiated into Life by some ice cubes running across his lips and down his throat. What are the choices of the Universe, anyway? Why bother with some of these shenanigans? Perhaps question #1 for God when you see him.

Gary's grandpa sat up for 48 hours straight, talking non-stop and giving loud sermons, I was told. How crazy...how, well, interesting really. The mind has so much to do when Death is near, it’s as if it has to get a whole bunch of junk out before it can truly rest and be delivered into a pure energetic form to reunite with the Universe from whence it came.

My mother is still listening to us, wanting to tell us some things that are on her mind but cannot. She said to my brother today, "I'm frustrated." A friend got the nurse to bring more Roxanol to my mother when she seemed painful and Mom said, "Here we go". Mom's still trying to work out what's happening to her and if she has any choices, I think. I tried to give her a choice, a small sense of control. Our family never really talked about unpleasant things. I tried to respect my parents' wishes to not know a lot of stats and specifics about pancreatic cancer.  But I think this led them to being stunned by the swiftness and severity of this cancer monster. The worst beast, the baddest son-of-a in town. I couldn't live with not giving Mom one last ditch choice - eat or not, it can be your choice.  So I laid it out for her this time - my only time, literally at the end of my mother's life, to be irreverent to our normal family social structure.

I shook her awake after each sentence..."Mom...Mom...Mom!" I tried to keep my tone gentle. "The only thing you have control over is eating. You make that decision. I know it’s hard. It may hurt, it may be slow and hard. But I want you to make that decision. If there is going to be anything at all that you can do right now, it’s to eat. It you are done...if you do not want to, then that is your decision. I will help you either way."

Could her brain grasp that and make a decision? Or is she already too hazy with morphine? Are you allowed to even think of a miracle at this point, when food won't really cure anybody of metastatic pancreatic cancer, but could possibly keep them alive to endure more suffering? What's the right decision in Zombie Land, when no real rules apply, time stands still and everyone, everyone is waiting for the most dreaded thing in Life to happen?

So I sit here now, unable to sleep through another night. We have a roommate now - bone cancer along the spine. Certainly even worse off than Mom at this point. Her family didn't stay with her, but I now know why. On the other side of the curtain, each breath she takes is like a horrible grunt and gasp and sputter and hack like nothing I've ever heard. Each time she stops I think she must certainly have met Death, but she coughs again, a spasm to get air into lungs that may not be quite capable of doing so anymore.

And Mom to my side, actually with quite a normal snore this night, no gurgling, but a choke of phlegm maybe every so often. And some whimpers...ever so slight...perhaps whispered, almost mouthing a word or two. This may be on a Death Manual list...I forget which one...1-2 weeks or a couple of days...that there will be people long gone that she sees or talks to or tries to touch. Who's to say that they aren't really there for her? How can I know what's best for her, really? I know what's best for me, which is to have my mom forever with me, touchable, huggable, and stubbornly expectant of me to fulfill dreams she never could. Maybe, just maybe, there are angels that she'll see to guide her to some new dreams, beyond anything we in Zombie Land can comprehend. What else can you hope for in a place like this?